Quality of Life of Latino and Non-Latino Youth With Sickle Cell Disease as Reported by Parents and Youth.

INTRODUCTION

Approximately 10% to 15% of people affected by sickle cell disease (SCD) in the United States are Latino, many of whom are primary Spanish speakers. A key tool for self-reported outcome measures, the Pediatric QOL Inventory (PedsQL) SCD module, was not available in Spanish. Here, we assess the linguistic validity of a Spanish translation and compare perception of disease-specific and generic quality of life (QOL) in a sample of Latino and non-Latino children with SCD and their parents.

METHOD

Following forward and backward translation, Spanish-speaking child-parent dyads linguistically validated the translated instruments. Disease-specific and generic QOL perception of 28 child-parent dyads who participated in a clinical feasibility trial, HABIT (Hydroxyurea Adherence for Personal Best in Sickle Cell Disease), were compared by ethnicity. Data were analyzed by descriptive statistics, Mann-Whitney test, absolute score differences, and minimal clinically important differences (MCID).

RESULTS

The translated questionnaire required no further language changes. QOL scores were higher for Latino children and parents compared with non-Latinos, with score differences exceeding MCIDs for total scores and the majority of subscale scores.

CONCLUSION

Spanish language PedsQL SCD instruments allow measurement of QOL in Spanish-speaking Latino children with SCD and their parents. Score differences for Latinos mostly exceeded MCIDs, suggesting that these differences are clinically meaningful. Confirmation of these findings is warranted.